Taking the decision to undergo cochlear implant (CI) surgery, which bionically restores hearing to people with severe and profound hearing loss, is not easy. I spent thirty years progressively losing my ability to hear, living with tinnitus, locked in the closet of my hearing loss, and using hearing aids. In 2013, when I discovered I was a candidate for bilateral cochlear implant surgery, I was full of doubts and fears, like everyone else. And it was the accounts and testimonies of other people with hearing loss who had regained their hearing with a bionic ear that encouraged me more and more. I documented every stage of the cochlear implant surgery, from the exams to the activation of the electrodes, including the feelings, visits to the ENT specialist, and the heavy emotional burden of the beginning.

**this post was originally written in 2013 and 2014. Today, I have bilateral cochlear implants and I can hear pretty well. I lead the largest online community of people with hearing loss in Brazil – Clube dos Surdos Que Ouvem – and I’m married to the best ENT surgeon in the planet (lol), Dr. Luciano Moreira.

 

In this post, I gathered all the accounts I published on Crônicas da Surdez (Chronicles of Hearing Loss) about the process that led me to make the decision to have the first cochlear implant surgery in 2013. It seems like it was in another lifetime. Ten years later, I am bilaterally implanted and hear wonderfully well with CIs.

You will read about my expectations, fears, sadness, apprehensions, and discoveries. How the post-surgery recovery went, temporarily losing my sense of taste (bad news: it never fully came back!), what happened with the “chainsaw” tinnitus. And also what the cochlear implant activation was like, the first sounds I heard—as well as all the emotions involved. There are many memories. Read this long post as if you were reading my diary and travel with me. Perhaps the words recorded here will help you gather courage, answer your questions about the CI, and make you lose your fear of trying to hear again.

How the cochlear implant surgery REVOLUTIONIZED my life

I decided to organize this material about my cochlear implant because every day I receive messages from those who are new to Surdos Que Ouvem (The Hearing Loss CLUB) and ask me: “Tell me more about what it was like to decide to get a CI!”.

This way, everything is organized in one place, after all, if there’s one thing a decade of writing about hearing loss has taught me, it’s that people don’t really like searching for older things on a website… Receive this compilation of posts as a gift from me to you. It’s an important and nostalgic piece of my history, of which I am very proud.

25/06/2013 – the day my journey has started 

When I received my diagnosis of progressive bilateral hearing loss at 16 (or 17, I never remember) years old, I thought maybe the day it became profound would never come. But that day arrived – there is even a post that shows a comparison between my audiograms from 2002 and 2012. I am veeeery happy with my hearing aids, which take me out of profound hearing loss and bring me to an almost mild hearing loss. That is in terms of the quantity of sound.

I can be on the eighth floor of a building and still hear a dog barking down on the ground floor, cars passing, an alarm sounding, some strange noise or another. I can hear music wonderfully well — and even the horrible, untalented bands that frequent the music studio on my street. However, regarding understanding what I hear, that’s another story. I reached the point where I hear with my ears AND with my eyes, only with my ears no more. Translating: for communication with other people, I am 100% dependent on lip-reading. With or without hearing aids. In fact, to have a good conversation with someone, I need three things: my hearing aids, light, and lip-reading.

Last week, I went to HUSM to have some exams with a friend (who is an audiologist and a professor at UFSM) who has been following my case since 2010, with whom I feel completely at ease. She is Michele Vargas Garcia (in the photo, with the headphones). I talk about her in my book in the part where I tell the story of the audiologist who asked me why I was so resistant to using hearing aids, and when I commented that it was because I was afraid of getting attached to the sound and one day not hearing anything at all, I heard back, “But then you get a cochlear implant!”.

Mi has unconditional patience with me and considers me the most foul-mouthed person in the world (yes, I swear a lot!!!). And, along with Mi, I have the unconditional help and support of another audiologist who has become a sister, Mirella Horiuti, from São Paulo. This duo holds my ground and my breakdowns regarding hearing – and the lack thereof! As they say, “suck it up”: my speech recognition index with or without hearing aids and without lip-reading is zero percent. How about that?

The cochlear implant surgey

Therefore, my next step in life is the cochlear implant. I have already done an infinite number of exams, which I started showing to some medical specialists in the subject. My desire increases every day. And my anxiety does too, to the point of having tachycardia when I talk about it and receive an email from a doctor. The decision has been made. Now I have to follow the steps that must be followed to then discover what God has reserved for me in this regard. I confess to you that just imagining the scene of listening to music and understanding the lyrics without having to read the liner notes gives me an unprecedented adrenaline rush throughout my body. I think that would make me the happiest person in the world!!

The other day I read the testimony of a 94-year-old American woman (!!!) who got a CI and wrote about how it was the best thing she ever did in her life, and about regretting not doing it sooner. Anyway, people, I need LIGHT. Show me the way!

23/07/2013

I’ve been more thoughtful than usual. You know when you start going through one of those overwhelming internal revolutions? Although painful, this is good. It is from chaos that sparkling stars emerge, isn’t it? The penny dropped for me. Hearing loss, that heartless cretin, has pushed me to my limit. Progressive bilateral profound hearing loss is not for the faint of heart. Seriously.

I deeply love my hearing aids, and if they gave me speech understanding without lip-reading, I think I would stick with them until the end of my days. The thing is, I reached the point where with or without a hearing aid, my speech understanding is nil if I don’t lip-read. And that is tiring. Discouraging. Distressing. Most days I come home cross-eyed after spending the morning, afternoon, and night reading other people’s lips.

So I dediced to do the cochlear implant surgery

I decided, then, to start what I call the Cochlear Implant journey. The first step, logically, was to find out if I am fit and a candidate for the CI. I find it funny how everything has fallen into place like a puzzle in this story. I remember the day my dermatologist and great friend Raíssa Chemello told me I should meet Michelle Lavinsky, an excellent ENT specialist in Porto Alegre. It so happens that I gave that lecture at the Winter Diseases Symposium in May, and there I met Michelle, who also introduced me to her father, the great ENT doctor Dr. Luiz Lavinsky.

I briefly mentioned my desire to go for the CI, and they both told me: “When you decide, let’s schedule a consultation!” Decision made, on July 12, I went to consult at the Lavinsky Clinic. Before that, I had talked with Dr. Leticia Rosito, a sweetheart – she cleared up many doubts and spent a long time talking to me.

I brought all the exams I had, including a thousand audiograms and CT scans. Arriving there, I felt at home. I confess I went with a certain ‘fear’ of Dr. Luiz. To my absolute happiness and surprise, he ‘disarmed’ me in the first five minutes of conversation. A gentleman, a sweetheart, a dear. And Michelle, well, words fail.

The ENT doctor

As I usually say when I give a lecture, I think the way the doctor presents our situation is extremely important, and I think that manner is determining for the decision we will make. A doctor who attends to you with a gloomy face, who has no patience, who doesn’t examine you, who is in a hurry, who doesn’t greet you with any enthusiasm, that is the one who will make you return home downcast, sad, and full of doubts.

Now, a doctor who welcomes you with open arms, a smile on their face, and is willing to resolve all your doubts and share their knowledge with you, that is THE ONE! Who gives you security, tranquility, shows the way, and even fills you with courage to face what lies ahead. Because, as we well know, when it comes to hearing loss, the journey is long and stressful.

I must say that I am very grateful for the health professionals who have emerged in my life since the creation of Crônicas da Surdez (Chronicles of Hearing Loss).

The exams before the cochlear implant surgery

On Monday, I had an otoneurological exam, which I defined as follows: it feels like you are watching The Matrix in Chinese, completely stoned, while balancing on a 15cm heel, trying not to fall on shards of glass. During the exam, I didn’t feel bad, but afterward… I felt for hours as if I had a typhoon inside my head and was ‘leaning’ from one side to the other, like a drunkard. What a dreadful sensation!

After that came a genetic test, BERA, audiograms, and hearing aid tests. Finally, the MRI of the skull, on Wednesday. But I was unlucky with that one; I waited for about three hours, and when they called me, it was to inform me that the machine had broken. In the final consultation with the Lavinskys, the verdict: a cochlear implant candidate, meeting all the necessary requirements.

In the next consultation, I will bring the MRI, and Dr. Luiz will ‘strike the hammer’ (make the final decision), and then I can submit the health insurance paperwork and move on to Part II, the bureaucracy. That will be in August, when I return from the FORL congress in Campos do Jordão – did I tell you that I am a speaker and will talk about hearing loss from the patient’s perspective to the country’s top ENTs and audiologists?

Confessions about the cochlear implant surgery

Now, the confessions. Don’t think it was easy. I usually consider myself strong, holding up all the waves, enduring all the blows of life. But this journey is personal and non-transferable. It’s difficult to explain to those around you what you are feeling, what your fears are, your expectations. I want to thank my mother, who was there the whole time – always supporting me, putting up with my bad mood, trying to make me laugh when I wanted to cry rivers of tears. And also my dear friend Clávia, who was around giving strength and helping us hold on.

There is no reason to cry because of the cochlear implant; quite the opposite. It is my light at the end of the tunnel. The issue is everything that is and was part of it. Thirty years of slowly losing hearing, for unknown reasons. Thirty years of losing important sounds, information, jokes. Being deprived of many things. Having to even select the places I go to for fun. All that care that it can’t be dark or noisy (there’s not much left, hehehe).

And along with that, the feeling that I have nothing more to lose. Do you understand what that is? In the literal sense, as people usually say ‘I have nothing to lose’, but when you see yourself cornered in a situation where you have literally no more hair cells to lose, that’s another thing entirely. Emotionally speaking, the situation is intense, to say the least. A whirlwind of confused feelings, a little anger for everything I lost, the expectation about the quality of life and the sounds I might gain. Anyway, I am ready. God willing.

About being the ‘strong woman”

One of the worst things about having a reputation for being super strong is that people think it is nothing more than your obligation to endure everything with a stiff upper lip. Ok, maybe so. But I really expected at least a few close people to send me an SMS, a WhatsApp, an email, anything, asking how I was. I missed that. At times like these, that text by Danuza Leão makes perfect sense. If a ‘fragile’ woman gets the flu, a thousand people come to offer medicine, tissues, help, blah blah blah. Now, if it’s a strong woman… Forget it! People assume she doesn’t need anything. It sucks, doesn’t it!

04/09/2013

On August 19th, I went to meet Dr. Luiz Lavinsky again in Porto Alegre. I needed to show him an MRI of the skull. I also needed to consult a psychologist – that is the CI protocol – and have a final consultation with an audiologist. To my surprise, it was with the dearest Maria Elza Dorfmann. The first time I spoke in public, at Doenças de Inverno, she was sitting in the front row, and it was to her that I looked the entire time I was speaking. As soon as I saw her, I said: “What a small world, I can’t believe it’s you!”.

One of the tests she gave me was super ninja. She showed me a list of ten sentences, and asked me to read them. After I read them, she covered her mouth and started saying those sentences randomly. Of course, without lip-reading, I couldn’t understand a single thing. But the brain is such an absurdly smart thing that, just by a consonant here and a vowel there, I ‘guessed’ what I had heard based on the sentences I had read. It was the coolest exam I’ve ever done! It’s as if my brain only needs a tiny thread of information to make something out of nothing make complete sense. Ninja is an understatement!

The consultation with the psychologist affected me. It’s strange having to tell your life story in a short time to someone you don’t know. And I, who am the queen of the ‘summary’, summarized so much that she asked me to ‘de-summarize’. Some questions she asked made me think. Things I heard my mother saying to her also made me think. And from then on, I became about twenty times more sensitive and melted butter than I already was.

Psicological effects of the cochlear implant surgery

What surprises me about this journey is that it really hadn’t crossed my mind that this could affect my psyche in the way it did. I was more concerned about ‘forbidding’ myself from having big expectations and ended up coming across a deep and unusual journey into myself. And you know well how exhausting and tiring those journeys are! I had memories from 15, 20 years ago. I kept recalling a thousand moments from my childhood. I caught myself imagining what it would be like to hear things I no longer hear. I thought that I will be an old lady who hears, unlike most elderly people who are losing their hearing. How crazy!!

Yesterday, out of the blue, the memory came back to me of when I was a kid and traveled to the beach. When I missed my grandmother, I would go to a payphone (my God, I’m so old!!!) and call home collect. I clearly and perfectly remembered the voice of the Embratel woman who said “after the beep, state your name, and the city you are calling from, tu tu uuuuuuuu.” What nostalgia!

The music

A basic little anguish: music. When I drive, the first thing I do is connect my hearing aid (AASI) with my iPad or cell phone and listen to music during the commute. What will it be like to listen to music with only one hearing aid? Or to listen to music with one hearing aid and a CI at the same time? Oh, my salts!

I keep remembering songs whose names or singers I have no idea of. It seems like I’ve come out of a coma, with so many random memories. In one of them, I went back to a night when my godmother took me for a drive in her Chevette, and a song started playing on the radio that was sooo beautiful, just voice and guitar. I remember the two of us singing that song – and incredibly, these memories are like a stab in the heart. How they hurt! I don’t know why, but they hurt a lot.

In the end, I realized that my nervousness about the surgery is only because it’s the first time in 31 years that I’m going under the knife; it’s part of it. But what causes me discomfort is knowing that I will be 30/40 days without hearing anything! I can’t manage using a hearing aid in only one ear. If I do that, an hour later I start getting a huge migraine that won’t go away even with a box of Tylenol DC. Not to mention that with only one hearing aid, when I take it off, I end up swaying like a drunk person, with my body and head ‘leaning’ to the side it was on. It’s not sustainable. So, that time frame between the CI surgery and the CI activation is going to be tense. It goes fast, right? I hope so!!! I won’t even think about the long rehabilitation so I don’t freak out…

The strangest feeling I have about the cochlear implant is that it feels like I’m going to meet someone who died. That someone, in this case, would be my hearing. Or, perhaps, the old Paula, the one who heard and understood, the one who didn’t need to be poked all the time, the one who was independent, who wasn’t afraid to be home alone, who didn’t hear with her eyes. What will I feel if I really meet that Paula again?

The second birthday

As I publish this post, I know that the health plan has already authorized the procedure on the bureaucratic side, and now it needs to authorize the implant device. The way things are going, I have faith that I will get my CI on the scheduled date, 09/21/2013. And if so, it will be my second birthday. Speaking of which, I turn 32 on 9/9 – and I’ll have to drive to Porto Alegre that day after work, as on the 10th I have an appointment with the anesthesiologist. What reminds me of what my friend/audiologist Michele Garcia told me one day while we were doing pre-CI audiograms: “Paulinha, I’m sure that after the CI, you’ll feel like your life is finally beginning!“. And there I go drowning in tears again.

17/09/2013

The date of my first cochlear implant surgery is marked and confirmed: 09/28/2013. We moved it one week after the initial date. My nervousness has passed, now it’s just anxiety. In fact, I don’t know how the people close to me are putting up with me, because I’ve become a flower of stupidity. Everything irritates me right now. Any misplaced sentence or silly question makes my blood boil.

I anxiously await returning to normal after the surgery. Will that happen? Hahahahaha!! Let us pray, for the good of humanity. And for mine, because I don’t know how I haven’t been punched by someone yet. A cynical, cheeky, and foul-mouthed mean spirit has taken over me. Things are tense.

I check into the hospital Friday night and have surgery very early on Saturday. I think I’ll be discharged Monday morning. After that, I have to stay in Porto Alegre for a week close to my beloved doctors. As for the activation, it will only be 45 days later. It will surely be a long 45 days. But I already bought about twenty books to fill my time and mind, of course.

My CI will be the Nucleus 5. I was told it comes with rechargeable batteries, but since I can’t adapt to them (I got tired of accidentally throwing away the rechargeable ones for my hearing aids) my friend Gilberto will bring me a stock from the US. Detail: I bought 120 batteries on Amazon for R$155. If I had bought them in Brazil, they would cost R$700. As I am an extremely anxious person, I was dying to buy an FM System too, but I ended up not having the courage – nor the $$$.

As for news, that’s all for now. I’ve been listening to music like crazy via Bluetooth on my hearing aids because I don’t know what it will be like afterward. By the way, does anyone know? Before activation, I don’t think I’ll even want to listen, because with only one ear, I know beforehand that I won’t like it. But what about afterward? How do you listen to music with a CI in one ear and a hearing aid in the other?

Paula Robocop is coming. Soon.

30/09/2013

The new babyborg of the neighborhood speaks to you! I had surgery on 9/28 at Hospital de Clínicas de Porto Alegre. As I write this post, I have already been discharged – this morning – and I need to stay here at least until the stitches are removed, which should happen between seven and ten days. How do I feel? Strange. For now, still without taste on the right side of my tongue, and my tinnitus, which was already loud, now oscillates in the operated ear between nothing and chainsaw tinnitus. My face is also a bit swollen on the right side, but thank God, no nausea or dizziness.

There are so many people to thank that I’m afraid of forgetting someone. I will try, but if I forget anyone, please forgive the newly-operated. First, the wonderful medical team and all the staff at Clínicas, whose service was perfect, from the bureaucracy to the ward. My mother, the most loyal and dedicated companion I have in this life. To my grandfather Chico, who I know protects me from Heaven since he left this world and whose presence was felt in the hospital room. To everyone who sent us messages of support and strength, my eternal gratitude. At times like these, we feel a little helpless and alone, and when someone takes a minute of their time to send a hello, it makes a HUGE difference. I learned that it is preferable to ‘sin’ by being ‘invasive’ than to sin by being a ghost.

I’m going to rest a little because I’m getting dizzy looking at the notebook screen. A huge kiss to each of you, and thank you, for everything, always. <3

07/10/2013

I finally feel better to sit down and write a little. Today I went to the doctor, and it was decided that the stitches will be removed next Monday or Tuesday. The dizziness has decreased a lot, thank God!! The tinnitus has stabilized well. The taste on the right side of my tongue has not returned yet. I’ve already met and am getting intimate with my ‘bald spot’. By the way, today I discovered that by running my hand over it, I can feel a part of the CI. I’m off the antibiotics.

I still haven’t figured out how many pounds I’ve gained as a bonus since the pre-surgery weeks, I just feel like if I take a deeper breath, my jeans will explode. But that’s a problem for later! What is killing me now is missing my dog, who will certainly turn his back on me with gusto when I can go home. The last time I was away for a few days, he treated me with a level 10 contempt; imagine now. I’m scared.

It’s funny that since the surgery, I sleep in a mummy position and wake up in the morning still a mummy in the same spot – for someone who practiced synchronized swimming during sleep in a duet with a Yorkshire, I’m doing well. My head no longer weighs 1000kg of lead as before, and, the cherry on top, I washed my hair on Sunday, in a legitimate war operation. It’s still not possible to wash it the normal way, so I’ve become the queen of dry shampoo – by the way, future implant users, note this down, it’s called Batiste, it works miracles, and costs R$17.

With my mother on Sunday, 9/29 – honestly, I don’t know what I would do without her on this journey. A zealous, worried, companionable mother who lives every emotion with me. If I cry, she cries too. With Regina Vaz Ribeiro – also known as mommy n.2 – on Sunday, 9/29. That day she came straight from Santa Cruz do Sul and brought the bread rolls I love most from my favorite restaurant – the Antigo Bistrô – besides a thousand magazines. I love them!! In addition to Regina, Ale Vernier, Aunt Naná, and Elene also came to see me. Every time a visitor arrived, this sweet girl here would break down crying…

Nothing better to lift your spirits than getting a gift!! I received goodies at the hotel from Brasil Sul, chocolates from the baby bi-implanted reader Isabella sent by her beloved mommy Cris, brigadeiros (truffles) from my best friend Jordana! And Carol brought me cookies she baked herself (she can get married now, girl!). Other delightful visits at the hotel were from my only cousin, who is now a doctor, Chico; da Bárbara Degrandi; da Ester Scotti; da Anita e do Zé.

The photo above is from the ninth day post-CI. I was in the process of getting intimate with my side bald spot, you know. The worst part is that I liked it! I got attached to the bald spot… I feel so modern! Combining that with my several tattoos and my predilection for leather and studs, you get a phony punk. I don’t feel THE SLIGHTEST urge to hide it, to cover it with my hair. Very proud of this side shave, people.

A technological miracle

I can only think of the Cochlear Implant as one of those technological miracles that you look at, understand, and think “wow, it’s so crazy, I want to kiss the guy who invented this!”! Honestly, I think the gravity of the situation hasn’t hit me yet… I internally programmed myself not to have any expectations, so I think I’m still a bit stunned, without over-philosophizing about what might happen. I’ve started to form an idea about how much my life is going to change for the better, and I can’t stop smiling. Thank God for medicine and technology.

I am well aware that it is a long and drawn-out process, there will be a big adaptation period, binaural hearing (hearing aid on one side and CI on the other) takes time to become ‘pleasant’ and everything else. But I entered this journey with an open heart and will face everything with resilience and my head held high. I confess that I can hardly wait to come here and tell you about my activation!!!! <3

16/10/2013

I’m already home, in Santa Maria. But I want to remember my last few days in Porto Alegre because they were very emotional. I keep receiving emails and messages asking how I am, and the answer is just one: I am living one day at a time. On some days, I feel great. But on others, terrible. And increasingly, I have the feeling that a person needs to be very well mentally before deciding to go through this whole journey, because it messes with our emotions too much.

I, who considered myself a monstrously strong person, sometimes find myself in tatters. I can’t even explain why. The feeling is that all the things I avoided feeling throughout my life are rupturing the dam I created myself and overflowing. It’s a little scary!!! I haven’t even formed a mental image of what my activation will be like, but I am anxious for it because everyone tells me that the tendency is for tinnitus to decrease a lot after activation – in some cases, it even disappears.

The secret to success is to focus on all the wonderful things the CI will bring to my life. I even think I have the courage to go through it all again later and operate on the left ear. The bad part for me was the dizziness in the first 12 days and the tinnitus – I was already used to it; I’ve had it 24 hours a day since childhood, but I was very bothered by the change it underwent; on some days, it sounds like a chainsaw, on others, it sounds like a cornucopia blowing a vuvuzela right in my ear. It is bearable!! Every CI case is unique; some people didn’t even have dizziness or tinnitus… You only find out what happens by having the surgery!

What a journey…

Two events reinforced my certainty that I had made the right decision. First, after the surgery, in the hospital room, there were about four people among my mother, aunt, and cousins – all there talking, a thousand things happening, and I was completely trapped in that horrible prison of silence. Silence is a terrible, lonely, maddening prison.

Second, a day before we returned, my mother got out of the shower and fell on the wet floor, injuring herself badly. I was already lying down and had already taken out the hearing aid from my left ear, meaning I wasn’t hearing anything. She spent about 20 minutes trying to get up and shouting for me, while I was there in the prison of silence again. When I saw what had happened, my heart broke inside. Hearing loss leaves you an ocean away from someone who is in the next room shouting for help. If I was already sure, after this event I was even more certain.

23/10/2013

October 28th will mark one month since my surgery. The incision has healed well, and my hair has already grown a bit. Even the tinnitus has stabilized. Now it’s just the anticipation for the activation!

I’ve been receiving so many emails, and I would like to share one of them with you today, because I know that many people out there behind the computer screen have an indication for a Cochlear Implant and are afraid to make a decision:

‘Today, 13 years into the illness, I am already at profound hearing loss, and I am already consulting with specialists to see if I am a candidate, but I am very afraid of everything. People already laugh at me with hearing aids, even more so with a CI, which is something you can’t hide, everyone will see it and keep asking what it is. The doctor told me there is no other path, either I do it, or I will lose everything to the point where even the CI won’t solve it for me anymore. I have a 3-year-old son who needs me to hear so I can protect him, but I’m awfully scared.

I have been an avid reader of Crônicas since I discovered it about 2 years ago, and I follow step by step everything you post. I have read your book many times, and I am impressed with the strength you have to face all this. I remember what you said a few days ago that for a person to undergo a CI, they have to be in a good mental state, and my psychological state is very fragile. I have been thinking a lot about the subject. I think I have no choice but to do it. But that feeling comes up, I saw you with your head shaved and I think about my long hair, wow, I get so sad.’

The other people’s opinions

When I decided to start this blog in 2010, I also decided to initiate a new and eternal phase in my life, which I jokingly call the “To Hell with the OTHERS way of life”. And since then, I live my hearing loss based on that.

The stares, the prejudices, the nonsense questions, and the ignorance of others do not bother me or keep me up at night – on the contrary, they only further strengthen that decision. Everyone has unresolved issues regarding their own hearing loss; I myself was terrified of taking the exams to find out if I was fit for the CI because I feared I wouldn’t be. And the beauty of life is in resolving all these issues.

Some don’t admit they need to use hearing aids. Others are mortified to use them. Many people spend long years hiding their hearing loss, and the saddest thing is that they don’t hide it from others, who notice it perfectly; they hide it from themselves. Right now, thousands of people are in depression because they don’t accept the fact that they no longer hear as before. Thousands more are in depression due to tinnitus.

Anyway, there are many issues. And, as I said in the book and keep repeating here, the great lesson is to fight against all this and find a way to find quality of life and be happy. I shared the email above because it pains my heart a little to realize that such a long-time, faithful, and dear reader is clinging to silly issues (hair, what others will think, etc.) and forgetting the most important one of all: your son needs you to hear so you can protect him.

Hearing loss leaves us an ocean away from the person who is in the next room!! And the question remains: if you have an indication to get a cochlear implant and you don’t do it because you focus only on what doesn’t matter or because you think you are fragile (which you certainly are not, we don’t know the strength we have until our only alternative is to be strong), what are you going to answer your son when he grows up and asks you about it?

Imagine him telling you: “Mom, you didn’t have the surgery because you didn’t want to cut your hair and were worried about what strangers would say/think?”. Well, there you go. Perhaps it’s time to review your priorities. I hope you focus on what matters and don’t lose any more energy on nonsense! A kiss.

The blog post that has changed my life: 07/11/2013

** If you are new here, perhaps you don’t know that I ended up marrying an ENT cochlear implant surgeon, Dr. Luciano Moreira. He discovered my existence because this post appeared on his Facebook timeline. He read it, and then he sent me a message. The rest is history!

Monday, 11/11/2013, is my Cochlear Implant activation. It was the first major decision I made in my life, as I spent months weighing the pros and cons, deciding, waiting until I was sure that this was what I wanted and should do. When I struck the hammer (made the decision), I felt so good! I didn’t feel afraid going into surgery, the 45 days with maddening tinnitus and a ‘dead’ ear (and the other one almost the same) passed quickly.

Of course, I had emotional breakdowns several times, but they are such intimate feelings that it’s not worth exposing them to the world so that people who are thinking of making this decision are not influenced by it. My breakdowns were due to remembering my entire journey, everything that hearing loss stole from me – include in that count a good part of my autonomy and most of my non-desire for great social interactions.

I feel like I want to be part of the world again, and by world, understand being with people. People = communication. Every new person is a challenge for me today: new lips, new tone of voice, new articulation of words. And that is so frustrating and tiring! When I was little, I remember being lively, energetic, extroverted, brave, crazy, and as I progressively lost the ability to hear, all of that went away with it.

I miss that person! My decision was based on gaining more quality of life, after all, with profound hearing loss, I reached the point where I had nothing left to lose. I write with my heart in my hand: I want so, so, so much for it to have worked out, and at the same time, I was immensely warned not to have expectations. Crazy, huh?

I put it in God’s hands. They say that by losing yourself, you find yourself, that sometimes life turns us inside out, and we discover that inside out is our right side, right? Inside, I feel that a new stage of my life begins now. With sound, or without sound, a new stage. Root for me that it will be a SONOROUS new stage, because I have never wanted something so much, with all my heart. I hope I am ready for everything that lies ahead!

PS: you who are already an adult and are reading this post and deciding whether to get a Cochlear Implant, think calmly, with deliberation, and, especially, take into account the valuable opinion of your doctor(s).

11/11/2013

‘For those who doubted love at first sight, I was beautifully proven wrong: and I already suspect it will be true love, eternal love. I went to the activation thinking I wouldn’t like it, after all, everyone told me I wouldn’t be able to differentiate a man’s voice from a woman’s voice and that all voices would sound like Donald Duck for several months. To my total and absolute surprise, I easily differentiated the six voices that I heard, and when Dr. Lavinsky entered the room and spoke, my brain immediately thought: ‘man’s voice, hi!’.

Everything is still very soft, and the mix of the CI sound on one side and the hearing aid (AASI) on the other is a bit bizarre. But imagine my surprised face when, upon returning to the hotel, my friend/audiologist/sister Mi called her mother, and I, with my back turned, started understanding almost everything she said. Understanding a voice WITHOUT lip-reading in the first hours. I almost had a heart attack!

I was so delighted that everything was different from what I imagined that I even ‘lost my fear’ of the long rehabilitation. I only ask friends who meet me from now on: please, don’t have exaggerated expectations of me. Now life will be, more than ever, one day at a time! PS: and the indescribable emotion of hearing my voice as I hadn’t heard it for at least 22 years? My heart can barely take it!’

On the 12th, I stayed in Porto Alegre and went to meet my cousin, who is a doctor. We talked, I recognized his voice, sometimes he spoke from the side to see if I would understand and some things I understood. I ran into two friends (Bruno and Sandro) on the street who came to talk to me and I also recognized their voices. I even commented to Bruno that I felt like I was back in eighth grade, when our friendship began, because I could hear his voice just as I did back then.

The first roadtrip after the cochlear implant surgery

On the 13th, I hit the road to return to Santa Maria. I drove. When my mother poked me for the first time during the trip to talk to me, I said ‘Mom, don’t poke me, just talk, I’ll keep looking straight ahead, and let’s see if I understand anything.’ We talked (lightly, but we talked!!!) from Porto Alegre to Santa Cruz do Sul without me looking at my mother’s lips even once. And I can say that I understood about 70% of what she said.

Upon arriving in Santa Cruz, I went to see my mother number 2, Regina – and finally heard her voice as it really is, and also Adônis’s voice, with whom I had a long chat, and, out of habit, he kept poking me the whole time.

Everyone commented that my expression was much softer and that I was no longer moving my face exaggeratedly to emphasize what I was saying. In the end, I think I pushed myself too hard because I got tired, on the journey from Santa Cruz to Santa Maria I was no longer able to understand anything my mother said without lip-reading, hahaha. Arriving home, I recognized my brother’s, grandmother’s, and aunt’s voices, and I could even hear my dog’s footsteps on the wooden floor of the house. I thought it was awesome!!!

But before going to sleep, I took the case that came with the Nucleus 5 to set up the CI dehumidifier and saw a small blue light on. It was the remote control. The day before, I had charged the control. My audiologist’s instruction is for me to change programs every Monday until my first mapping, which will be on 12/16. I left the office on P1. To my surprise, since I didn’t lock the control, it must have touched the case and switched to P4. I did find it strange that I was hearing my voice even louder and so on.

I spent an entire day on P4 without knowing it. Then my mother called Adriana, who told me to switch back to P1 right away. I’ve read accounts of people who said that when they got home, they went straight to P4, but I’m going to respect the medical orders. In fact, they gave me the ‘scientific explanation’ for not skipping steps, and Michele Garcia herself (my audiologist/sister/friend who was there on activation day) told me it made perfect sense and that I should obey. Therefore, back to P1.

On the 14th, I kind of reached my limit. The normal noises of a functioning house with several people home left me stunned. I started getting irritated, stressed, and freaking out. If someone called me “Paula” one more time, I was about to punch them. I think my brain went tilt. To make me crazier, my CI (the part that goes behind the ear, not the magnet) keeps falling off all the time because my ears are tiny. That’s when I realized it was time to take a sedative and go to sleep. I gave up. Without any shame.

Today, the 15th, I had the beautiful experience of ‘accidentally’ hearing the sound of the rain. I started hearing a noise, saw that it was raining, closed the bedroom door, and turned off the TV. Done: my heart was pounding for about 10 minutes, listening to the rain fall outside, something I can’t even remember the last time I was able to do.

I’m still a bit stunned, trying to get intimate with my CI. I can say that I LOVE HEARING MY VOICE the way I am hearing it. Yesterday I spent the whole day just with the CI to see what it was like; today I’m wearing the CI and a hearing aid (AASI). The thing is, the sound of the two together hasn’t ‘merged’ yet, meaning that at the end of every word/sound, it comes with “RRRR,” like a short circuit. The audiologists said that usually after about two weeks, that disappears.

Ah, they had also told me that listening to music with the CI was horrible. We put a house music CD on in the car, and I not only heard everything but loved the experience.

I’m so grateful

Anyway, I was prepared for the worst, hoping for the best, and accepted what I received. I feel so, so grateful and blessed. I feel like everything about me is changing inside; I can’t explain this. I feel happy, scared, stunned, surprised, tired, euphoric, all at the same time.

Finally, great news: my Crônicas da Surdez (Chronicles of Hearing Loss) has been cleared to compete for the Sérgio Buarque de Holanda Award for Social Essay, from the Fundação Biblioteca Nacional 2013! What pride, y’all! ?

24/11/2013

Two weeks of cyborg life already. Right after the activation, I felt a sadness because the part that goes behind the ear wouldn’t stay still, falling off all the time. I thought the CI would free me from this kind of hassle, as I wouldn’t need an ear mold, etc. Then I got a nervous tic of checking every 30 seconds if it was in place. Some people told me I should use a mold to hold it, but the idea never crossed my mind since, for the first time in many years, my right ear ‘breathes’.

I was recommended the double-sided wig tape in the CI Facebook group, but my audiologist asked me not to try that yet because it’s super strong, my skin is extremely sensitive, and if I touch the scar behind my ear, I still feel something. I obeyed – but I’m going to buy it online. Now I use a small size earhook that holds better than the medium one I was using, and I also have a small snugfit for when I need even more security. The big discovery was that the rechargeable batteries, which I was so reluctant to use, are much smaller than the compartment that holds normal batteries, meaning they provide greater stability.

Therefore, for the past three days, I’ve only been using the rechargeable ones. Little by little, I’m adapting. The CI requires more effort than a hearing aid: every night you have to disassemble it and put it inside the dehumidifier, put the batteries to charge (and keep an eye on them because it takes 4 hours to charge so as not to damage them) and in the morning reassemble and use it. It’s nothing too much, but it takes a few days to get the hang of it. The first day I had to remove the normal battery compartment, I was shaking!!! What fear of breaking the thing…

I’ve already noticed how much I miss having the support I need in Santa Maria. I’ve lost count of how many times I’ve been to Porto Alegre. May God help Santa Maria to have cochlear implant services soon because it is really very annoying and uncomfortable to be 4 hours away by road if anything happens – and with me, something always happens!

The first thing I do in the morning is put on my CI and my hearing aid. On some days, I spent the whole day just with the CI to see what it was like, but it’s not good because I (really) need the power the hearing aid gives me on the left side and also because, if I take it off, the tinnitus goes through the roof. I notice that the tinnitus on the operated side has decreased, and I find it funny that the only time of the day I remember it is when I get up and go to the bathroom – it seems like the first time I lift my head in the day brings the chainsaw tinnitus back, but at least the duration is now about 5 minutes. As soon as I put on the CI, the chainsaw turns off.

The feeling I have is that I lived for decades in a Buddhist monastery, and suddenly, I was kidnapped and taken to the center of a hysterical big city. In the first few days, my astonishment was so great that I felt good, but then… I had real days of rage, of not leaving a dark room and needing a sedative to hold it together. My brain obviously still doesn’t know how to filter what drives me crazy, and I feel like a newborn relearning to hear everything.

I don’t know if you’ll find it funny, but I do: in the first few days, hearing birds and my little dogs’ footsteps was something that filled my heart with happiness. Around the end of the first week, every time I hear the dogs’ footsteps, the vein in my forehead pops, and when the birds start their morning racket, my goodness, I want to grab a gun and kill them all. I pray for the day my brain filter starts working!

I discovered that peeing is like being in front of Niagara Falls – the noise is so loud that I’ll never be able to go to someone’s bathroom again, for sure. Even the sound of my notebook keyboard has changed for me. And noises that I didn’t even know existed anymore scare me every day: the kitchen clock, some Chinese cats that keep waving their hands, the air conditioner, the bracelets I like to wear, the cabinet doors. It’s discovery after discovery, rediscovery after rediscovery.

What gives me the most pleasure is being alone in the room, turning on the TV to the Sony Channel, and listening to the series. Since the subtitles are in Portuguese and they speak in English, I read the subtitles and wait for what I’m going to hear. I look like an idiot; it reminds me of when I was about 16 and followed a ritual to watch Dawson’s Creek.

I LOVE listening in English; every word I hear and understand makes me feel like an Egyptian queen being fanned by handsome, muscular soldiers on a hot summer day. #aloka

My friends are a bit irritated with me because I’m having a moment to myself – the fewer people around, the better I feel. I avoid anything that will cause me apprehension or stress. I’ve already had a few outbursts at home like ‘if someone says “Paula” one more time, I’m going to knock their front teeth out!’! and I was startled because I’ve always considered myself the most zen person in the galaxy. I’m telling all these things because I think it’s very important to tell it like it is. The internal change is imperceptible to others, but it leaves us in tatters. And emotional tatters are difficult to deal with. Yes, I’ve been suggested to go to therapy, and yes, I’m evaluating the possibility.

But no day of rage surpasses the miracle of hearing my voice with perfection and richness of detail – now I talk to myself all the time (when no one is around, hahaha) and I think out loud in English too. I no longer make an effort to speak. Rodrigo Nunes had told me that we feel like we are shouting, and it’s true; several times I’ve been asked to speak louder, and I’m like ‘but what do you mean, I’m already shouting here, and they want me to shout even more than that’.

I’ve been thinking (look at the anxiety there) about having surgery on the left ear soon because I want to hear completely the way I hear with the CI. Each hearing loss case is unique; I have a long road ahead of me, but the truth is that I am tremendously happy. It is a miracle to have a sense back thanks to technology.

I feel like my life is just beginning; I look like a teenager thinking about everything I still want to do. I get tachycardia just thinking about it. I want to get better soon, but I don’t have a perfection complex – what comes in addition to what has already come is a profit. Many people ask me ‘and then, are you understanding everything?’. Obviously not. Sometimes I get great scares from hearing something and understanding it out of nowhere – like yesterday, I was on the PC, and I heard THREAT DETECTED, said by the beloved antivirus. I laughed to myself.

I’m not the same perfon anymore!

I can say that I am no longer the same person. Remember when I used to say that the CI requires a lot of strength and courage from us, besides requiring us to be mentally stable? That’s true for us to make the decision to have the surgery. But what it requires of us after activation, I still haven’t found the ideal words to explain.

However, don’t worry: I’m happy, I feel like a miracle, I think I won the biggest gift in the world, and I cried with emotion the day I heard the guy from the hotel knocking on the door with his hand to deliver a FedEx package. Imagine what that means to someone who didn’t hear her own mother calling for help in the next bathroom after a fall two months ago.

Anyway: I feel like I’m part of the world again!!! Anyone who is already at profound hearing loss, even with the best hearing aids, has no idea of everything they are still missing out on.